Chronically Bendy: the EDS diaries

Chronically Bendy: the EDS diaries Part human, part jellyfish. 100% tired. Learn about the glamorous life of hEDS, PoTS & pain with me. Author of The Bendy Handbook: linktr.ee/chronically_bendy
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Happy Sunday?! 🥴
12/04/2026

Happy Sunday?! 🥴

✈️
10/04/2026

✈️

I’m going on holiday! ✈️ Please share your best hEDS / POTS travel hack in the comments 🦓
07/04/2026

I’m going on holiday! ✈️

Please share your best hEDS / POTS travel hack in the comments 🦓

Just make ‘em salty 🧂
03/04/2026

Just make ‘em salty 🧂

Is it even bedtime without five hours of personal procrastination first? 🫣
01/04/2026

Is it even bedtime without five hours of personal procrastination first? 🫣

Going back to my self-advocacy masterclass… I thought I’d let you all know just how much that moment of standing up for ...
31/03/2026

Going back to my self-advocacy masterclass… I thought I’d let you all know just how much that moment of standing up for myself actually changed my care and outcome.

Not only did I end up with a far more experienced anaesthetist (one who understood that local anaesthetic alone wasn’t going to cut it) but I also had *my* surgeon who specialises in connective tissue disorders and truly understands hernia repair in EDS patients. Being the same surgeon I had that hour-long consult with, I already knew I was in the right hands.

And… I’ve just unveiled my belly button.

IT’S (mostly) STILL THERE 🎉 and I genuinely cannot believe how tidy it looks. Here’s hoping for minimal scarring 🤞🏻

Have you ever had surgery on your belly button? 🦓🫶🏻

🙄
31/03/2026

🙄

Surgery complete. Currently waiting to meet my new belly button.
29/03/2026

Surgery complete.
Currently waiting to meet my new belly button.

1% I tell people I'm okaythe way a phone stays on 1%, Still functioning like nothing's wrong.You can still use it, but e...
20/03/2026

1%

I tell people I'm okay
the way a phone stays on 1%,
Still functioning like nothing's wrong.
You can still use it,
but every second there's a warning
in the corner I try not to see.
This is what it feels like:
running on the last bit of something
I can't recharge.
People don't notice,
They see the screen on and assume I'm fine.
They don't feel how close it is,
how one more call,
one more message,
might be the thing that finally drains me.
And the worst part is,
I don't even know where
my charger is anymore.

- Ticus Writes

EDS: a visual
18/03/2026

EDS: a visual

Awaiting assessment for POTS?Tilt table testing isn’t the gold standard people think it is for diagnosing Postural Ortho...
18/03/2026

Awaiting assessment for POTS?

Tilt table testing isn’t the gold standard people think it is for diagnosing Postural Orthostatic Tachycardia Syndrome (POTS).

An active stand test (done properly) is often all that’s needed:
✔️ Measure heart rate and blood pressure lying down (after 5–10 minutes of rest)
✔️ Stand (or sit upright if needed)
✔️ Monitor heart rate and BP at 1, 3, 5, and 10 minutes

A sustained heart rate increase of 30+ bpm (40+ in teens), without a significant drop in blood pressure, meets diagnostic criteria.

So why are people still being told they must have a tilt table test?

Because:
– Not all clinicians are confident diagnosing POTS
– Tilt tests are used to rule out other causes (like orthostatic hypotension or vasovagal syncope)
– Systems rely on “specialist confirmation” instead of clinical competence

But here’s the reality:

A POTS-aware GP can:
✔️ Take a proper history (palpitations, dizziness, fatigue, brain fog, heat intolerance)
✔️ Perform an active stand test in clinic
✔️ Exclude red flags
✔️ Start first-line management (fluids, salt, compression, pacing)

Because the longer people wait for their referral to be accepted, the longer they go without support, treatment, and validation.

How were you diagnosed? 🦓🫶🏻

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